One Mom's Perspective: Our Autism
Updated: May 2, 2019
By: Dr. Nickole Cottrill
From Colleen: Nickole Cottrill is what I call a "mom goddess". She is one of the most active and beloved JFM's in our group. I love her perspective and attitude! Here's a glimpse into her life. This entry and more can be found on her blog "Jayden Mykel's Life Journey" at https://nickolecottrill.wixsite.com/website/single-post/2018/02/10/Our-Autism
Our Autism | Autism Blog | OH | Jayden Mykel's Life Journey
I want to talk about Autism, our Autism, not the Autism that so many think of when they hear the word. However, I first want to say that my writing and story is exactly that, mine, our, story. This is NOT to downplay the struggles associated with families who deal with less severe forms of Autism or behavior issues. This is simply to explain our little area of the spectrum, that is all. I wanted to write this because so many times when I say my son has Autism, I hear, oh, what's he really good at or can he memorize numbers or states, or the other stereotypical things people think. He can do none of that. He's not "good at any of it."
As most know, Jayden is 9 years old. He has Cerebral Palsy that affects his legs and right hand, which makes him unable to walk and have full function of his right hand (hence that darn toy he holds in his right hand all day every day lol). He also has nocturnal epilepsy that causes him to have severe seizures in his sleep that are difficult to stop (his last one lasted 2 hours, and he almost didn't live). He also has von Willebrand's disease, which is a blood disorder that causes him to bruise easily and it looks like someone was murdered when he gets a paper cut. He also has severe constipation, major developments delays, and some other medical issues. Finally, Jayden has severe level 3 Autism. His Autism causes him to be nonverbal, have high anxiety, and it makes him completely against any social settings. It also causes him to have severe behavior issues that can result in hours of meltdowns, head banging on the floor, hitting himself in the head with his hand or objects, and physically attacking me and others through scratching, biting, hair pulling, and hitting. He doesn't understand how strong he is or how severe he is hurting others partially due to his delays and partially because he does not feel pain as we do. That makes it hard to explain my pain to him.
So, after all this rambling, what's "Our" Autism you say? Well it's being awake for 34 hours straight and sleeping only a few hours, it's meltdowns all day because, well, because I looked at him the wrong way, I farted too loud, I didn't fart loud enough (the kid loves farts lmao), the TV is not on the right channel, or because I asked him to do his activities. It's not being able to go into society during the daytime hours because he can't tolerate it (hell, at one point I hadn't been in a store for 7 months straight). It's going on 3-hour car rides almost daily to an old car wash (but it actually takes credit cards, which is awesome!) in West Salem, Ohio because the ride calms him and that's his favorite car wash (can you imagine the miles I put on our van lol). It's picking his 100-pound butt up to lift him in his wheelchair, car, bathtub and getting my hair ripped out or scratches on my face because in the split second I bent down to pick him up, he changed his mind and couldn't tell me. Our Autism is also hundreds of scars on my face, arms, hands, chest, and legs from his scratches. Bald spots in my head and chunks of my body missing because it bit me and wouldn't let go. It's the recent middle of the night Walmart trips hoping and praying no one talks to us on our way to the items we came for and that there is no one in line and the cashier is an asshole. Yes, we want that asshole cashier that doesn't ask us how we are or doesn't speak at all lol. Why? Because although I am an extremely friendly person, Jayden is not. Small talk and wasting time sets off a bomb in him that results in hair and blood clean up (mine, of course, lol) on lane 3. Our Autism is also giant eggs on his forehead because he made contact with the floor too many times before I got to him. It's also poop smeared on his face and caked on his arms, hands, and entire body. He must be watched 24/7 as he has no care in the world and, well, poop smearing is such a fun thing to do (not according to me! lol). Don't even get me started on the places I've cleaned it up (in the air conditioner is one example. Can you imagine the smell. lmao). Our Autism is also loud country music playing at all hours because it HAS to be on. He also likes 2pac as well. Oh God, what the neighbors must think of "you wonder why we call you bitch" and "I'd ratha be your N.I.G.G.A so we can get drunk and smoke weed all day" at 3 am. Lmao. No, seriously, my neighbors are great and understanding. In fact, they even decided to wear headphones most of the day lmao. Of course, that is partially due to the screaming that goes on in this house from Jayden, but let's be real here, I have an almost 16-year-old daughter too. I can't say who screams more. Lmao. She might say I scream the most, but I think she's the winner with her overly dramatic hormonal ass (yes, I'm a nice mom, just don't ask her. Ha ha ha).
Now to get back on track here, our Autism is so many more things, but I'd have to write a book to list them all. My point of all this was just to show you; Autism isn't the same for everyone, which is why it's called Autism SPECTRUM disorder. For us, if I must be blunt, Autism is hell, it has blocked out a child who otherwise would flourish in social settings, it stops him from being a big mouth like his sister and telling me he hates me when he's mad or that he loves me when he's happy. Our Autism is not a damn gift as I have heard so many say over the years. It's a fucking curse that took my son’s brain and body hostage in the worst way possible. It took his voice, his happiness most days, and it took the bond and relationships away from him that he could have had. He doesn't like to be touched, he doesn't give hugs, he doesn't snuggle on the couch, and he surely doesn't want anyone asking him to do these things. However, when I had suspicion that he had Autism, I added kisses into our daily schedule. I am so glad that I did because I at least get kisses. :) Finishing eating, kiss, get in your wheelchair, kiss, put your shirt on, kiss, and so on. It has become routine, and he thinks it's just a normal part of the day. I'd say I'm winning for that one!